Our 1 year old daughter was diagnosed at the beginning of June with Usher Syndrome Type 2a. In the small amount of time we have had to research Usher syndrome and learn more about the individuals who have it, the more we want to help.
The autumnal equinox marks the start of days that contain more darkness than light. It is a powerful metaphor for the threat of Usher syndrome, the most common cause of combined deafness and blindness.
In honor of the first global Usher Syndrome Awareness Day on September 19th, I'm walking/running one mile a day for 25 days. I'll then join my USH family around the world for the final 1.2 miles in this mile-a-thon.
Help me own the Equinox. Together, we can make Usher syndrome history. #USHEQX